One family’s fight to make your food safer--and what you need to know now
We felt like our child had been run over by an invisible truck and nobody was really interested in finding the driver.— Barbara Kowalcyk, Centre for Foodborne Illness Research & Prevention
Pat Buck remembers, all too well, the helpless bedside moments she spent with her daughter Barbara Kowalcyk and then-suffering grandson, Kevin. “You’re graphically there. The smells are horrible. The sights are horrible. The cries are pitiful. And you just can do nothing except sit by that child and just wait.” Pat and her daughter weren’t allowed to touch Kevin as they sat by his hospital bed for twelve days--doing so would have brought him incredible pain due to the Hemolytic-uremic syndrome that had developed. In late 2001, Kevin died from E.Coli 0157:H7 poisoning. The lack of public health response after Kevin’s death initiated a long and arduous journey for Pat and Barbara. This mother and daughter team--with the support of family, friends, volunteers and strangers--have fought for close to a decade to better understand the cause of Kevin’s death and to ensure that a similar tragedy not spread to more American families. In 2006, they founded The Center for Foodborne Illness Research & Prevention (CFI). The centre was highlighted in the oft-acclaimed documentary, Food Inc. The CDC estimates that 76 million Americans get sick from foodborne disease each year. Of that yearly number, 325,000 people are hospitalised and 5,000 die. As Pat explains about her motivation, “You can’t go through twelve days of watching that kind of episode unfolding in front of your eyes without coming to the conclusion that this is a devastating, nasty, ugly disease. And it’s preventable and we have not taken the steps to put the preventions in place yet. That is beyond disappointing.”
An invisible truck
Barbara vividly recalls her first interactions with the health department. While the Kowalcyks were in the hospital with Kevin, the health department came to conduct an hour-and-a-half long interview as well as collect stool samples from the family. But, that was the last they heard from the health department. About a month after Kevin’s death, Pat decided to follow-up. She was shocked to learn from the health department that both her husband and daughter had also tested positive for E.Coli 0157:H7. Yet, the health department had failed to inform the family or their doctors.
Barbara’s concern then turned to her preschool-aged daughter, Megan and the children she’d been in contact with during Kevin’s hospitalization. Person-to-person contact is high among preschoolers. As Barbara explains, “The week after Kevin died it was a miracle that Megan was fed and clothed. She was five years old at the time and there’s no way that anybody was asking her if she was washing her hands or using soap.” Seemingly harmless actions, like Megan’s frequent trips to the public swimming pool, had put the entire community at risk.
Barbara continued to push on the health department. “They finally came back to us and said something to the effect of ‘Well, it’s too bad we never investigated your case, but now, too much time has passed and there’s a 95 percent probability we won’t find the cause, so we’re not going to look.’ We were devastated. We felt like our child had been run over by an invisible truck and nobody was really interested in finding the driver. We wanted to sue the health department. In our opinion they had sentenced us to a lifetime of unanswered questions. We really just wanted to know what happened. What got him so sick that caused him to die?”
The family secured a lawyer who suggested obtaining a sort of DNA fingerprint (via PFGE or Pulse Field Gel Electrophoresis) for the ground beef that Kevin could have consumed before becoming ill. Seven months later (and several threatened lawsuits), they finally obtained the information from the USDA under the Freedom of Information Act. They learned that Kevin’s PFGE pattern had not been typed, uploaded or compared in the proper way. It took two more years before they learned that Kevin matched a 2001 meat recall on two enzymes. Yet, they still have never been able to conclusively prove that that’s what caused his illness.
Kevin’s law and a new road
In that spring of 2002, Barbara’s husband, mother and sister-in-law went to Washington D.C. to create and champion Kevin’s Law. Pat remembers how quickly their lives had been uprooted. “It became very clear to me that we were going to be walking on a road that was very different from what we had planned.” Kevin’s Law was meant to stop contaminated poultry and meat from entering the U.S.’s food supply. Under such law, the USDA would be responsible for identifying life-threatening foodborne pathogens, creating higher production standards and closing plants that repeatedly failed to uphold such standards. Unfortunately, Kevin’s Law did not pass, though it has been incorporated into larger pieces of legislation.
At one point during her travels to D.C. while waiting to visit with a senator, Pat got into a conversation with the man sitting next to her. He was argumentative about her cause. At the end of their conversation, as the man was called in to see the senator, he turned back to Pat and said, “Look, lady, you do not understand the economics of it all. Americans want their dollar menu.” Pat was indignant, “I just almost jumped up and screamed that there are no Americans that would want a dollar menu so much that a little boy would suffer the type of death that Kevin had. And I asked the receptionist who he was and she said he was a lobbyist for the meat industry. From that moment on, I thought: somehow people are going to hear our side of this story.”
Research, education, advocacy, service
Barbara and Pat were in Washington when the 2006 spinach outbreak occurred. The outbreak was a painful reminder. As Pat explains, “I will never forget being in Washington D.C. when it occurred and seeing that picture of that beautiful little boy on the T.V. … It was very, very, very difficult to deal with the fact that here we had worked for--at that point--four long years and we were still facing an impossible situation. It was shortly after that we decided to form our organization.” Barbara set her sights on creating an impactful organization like the American Cancer Society and the American Heart Association. She wanted to have a similar impact on the foodborne illness health area.
When CFI formed in 2006, Barbara and Pat knew science would serve as its most fundamental building block. As such, Barbara went back to school to get her Doctorate in Environmental Health at the University of Cincinnati. “I figured we needed to have the science behind us. It’s been our experience that if you rely on the science then that steers you right. It will help you down the right path. It’s worked for us.”
A former teacher, Pat’s main interest in life and in her role at CFI has always been education. “The day before Kevin died I was offered my first full-time teaching job. I’ll never forget talking to that principle. He said, ‘Well we can bring somebody else in for twelve weeks and then you can come on.’ I said no, you really don’t understand. I’m not going to be teaching the way I thought.”
Misconceptions we can’t afford
The CFI knows quite well the misconceptions many American’s hold about the risk of foodborne illness. As Pat puts it, “Modern American people really don’t under the basic premise of this. Which is: food carries risk. They just really kind of put that out of their minds. The combination of the general public’s lack of knowledge about food in general, the inadequate protections that currently exist (in particular for food oversight agencies) and the globalisation of food supply has brought things together into a not-so-perfect storm.”
As explained on CFI’s site, the populations at the highest risk for foodborne illness are children, senior citizens, pregnant and post-partum women and anyone with a compromised immune system. Victims of such illness can develop everything from reactive arthritis to Gambre’s syndrome. The E.coli 0157:H7 strain of enterohemorrhagic E.coli is particularly frightening as it can lead to potentially fatal Hemolytic-uremic syndrome.
Barbara realized how uninformed about food safety she was before Kevin’s death. “The thing that shocked me is that, I consider myself a well-informed parent. I have a child with food allergies and so I knew about cross-contamination. We didn’t eat out. I worked in clinical research and read lots of medical journals and read all the parents books. When Kevin died I knew more about car seat safety than I knew about food safety. But look at how many times a day I fed my kids.”
When Kevin was initially put in the hospital, Barbara and her husband were shocked. “The doctors came in and sat us down and said ‘We’re sorry, this is one of the worst possible things that could happen to your child. The best we can do is keep his body alive while the disease runs its course and hope we can fix it when it’s over.’ You’re standing there like, ‘What?’ We live in the United States. I had no idea that those were the risks. Had I know then what I know now I would have made different choices.”
Prevention through practice
The best way to protect oneself from foodborne illness is to prevent initial contamination. Barbara urges people to become their own advocates for safe food and water or safe sources. This means knowing where you food comes from and how it is produced. “If someone walked up to you and said, ‘Oh, you’re thirsty. Here’s a glass of water that has been sitting on the table’ would you drink it without asking a few questions? Probably not. Yet lots of times we eat food without understanding how it was produced. Who produced that food? What methods were used? How did it get to your kitchen?”
Barbara and Pat continue to pursue their mission. This August, Barbara was awarded the Lennon Ono Grant for Peace. But, Pat’s legislation work can leave her feeling discouraged. “I’ve been working on a piece of legislation for a year and a half and I have fourteen days left to get it passed. Fourteen days. And if it does not get passed, it’s very likely in my mind that we will not have the momentum to drive us to this point again, maybe for another five or ten years. When I think about that I realize that that puts hundreds of thousands of people at risk. How could I have been working on something for almost nine years and have that hang in the face of fourteen days? What magical thing do you have to say that you haven’t already said? What argument have I left unturned?”
In light of such tremendous loss, continued setbacks and arguable wrongdoings, it’s a wonder that Barbara and Pat don’t ever question that road they were called upon. Perhaps it’s due to what they choose to remember most about that nine year course. Pat sums it up gracefully. “The kindnesses that people have shown on this journey… their willingness to help. It just impresses me very much.”